Transition Continuity Promotes Long-Term Retention in Adult Care Among Young Adults with Sickle Cell Disease

▪ Introduction: During transition from pediatric to adult care, young adults with sickle cell disease (SCD) experience increased acute healthcare utilization and mortality. Functional transitional programs maintain care quality; however, there is a dearth of program outcomes concerning adult care retention. The St. Jude Transition to Adult Care Program is embedded within a co-located medical home for SCD spanning the ages of 12-25 years. The co-location model bridges pediatric and adult care at three levels: (1) hematology provider (2) neuropsychologist and (3) transition nurse coordinator. Previous work demonstrated that young adults who receive care within a co-located transition model of care do not have the typical increase in acute care utilization during transition (Nolan, AJH 2017). Here, we tested the hypothesis that individuals who participated in the co-location model until age 25 years have greater retention in adult care 12- or 24- months after engaging in adult care, compared to those who only received pediatric co-location transition services (until age 18). Further, we explored adult environmental factors as predictors of retention in adult care at 12- and 24- months. Methods: With IRB approval, we analyzed the outcomes of participants of the longitudinal cohort study Sickle Cell Clinical Research and Intervention Program (SCCRIP, PBC 2018), who completed transfer from pediatric to adult care from January 2007 to December 2017. Participants were excluded if they did not have enough time in adult care for the 12- and 24-month retention analysis. Adult care retention was defined as continuation with the same provider for ≥12 or ≥24 months post-pediatric care and was compared among adults who transferred to adult care within the co-location model vs. those who did not. Chi-square tests were used to test associations between demographics and co-location model exposure. Logistic regression estimated the association between care abandonment (defined as voluntarily discontinuing pediatric care or dying before 12- or 24- months from initiating adult care) and co-location status at 12- and 24- months. Each model was tested for effect modification and confounding by the following variables: sex, genotype, year of last pediatric visit, and age at transfer. Fisher's Exact Test investigated predictors of adult care retention within the adult co-location model including employment status, education level, crowding, marital status, household income, and he